How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

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Senior Member

Thanks for this info. I do drink warm water at least 5 -8 glasses/day but it is harder now - with thyroid disease.
With my Gastroparesis - Stomach paralyzed - it is quite hard to drink volume. I was drinking Powerade (no sugar) before blood work.
Yes, I get my blood drawn so much - in MS I flew there to see Motility Specialist to get stomach pacemaker - he did what seemed to be 30 or more vials - to make sure I would coagulate during surgery.

Thanks - did not know it was important to use salt - I avoid it my whole life due to high blood pressure.

My Internist had Quest lab tech in his office - she had to use veins in my hand, and I held them downwards - only way she could get blood - but it hurt too much. 23 vials - that is a lot.
Thanks for the info - I have never "prepared" like you do - now I see it is very important.

Since you said high blood pressure then high salt intake may not be the way to go...so please don't unless a doctor you trust okays it. We all have different co-occurring health issues that makes what works for one not work for another.

Senior Member

Thanks didn't know sugar is important - I avoid that too - I have Impaired Glucose Tolerance (IGT), usually tested
by A1C test every 3 months - this is pre-Diabetes 2. But my A1Cs are like normal people all these years.
I cut chocolate candy out mostly -I was addicted to it, but it hurt my tummy, was trigger for Interstitial Cystitis.
Hmmm - coconut water - Whole Foods is down the street - it tasted terrible when I tried it, but will get some now!

It is so challenging when you have so many different medical problems- I feel you! Sugar would not be good in that case.

I love coconut water and 1 cup has 9 grams of carbs so I think I will resume drinking it. I have been resorting to Gatorade with my horrible migraines because they help but maybe the coconut water would do just as good of a job.

I am picky about my coconut water...I like them in cartons best, 100% pure coconut water and chilled.

I can't afford my very favorite which is like fresh pressed and very perishable and a small bottle is like 3 or 4 dollars. Trader Joe's and Whole Foods carry them they are so good to me.

No one in my family likes coconut water. My middle son calls it, "Turtle Water" which cracks me up.

Senior Member

@starlily88 ...My husband is a pharmacist and a customer recommended her. We did read reviews etc first but decided I needed to take the chance. She is expensive and does not take insurance so we sent the bills ourselves to our insurance company.

She is basically on call to me whenever I need....If I have a problem or question I can email and she will respond very quickly. I was losing a lot of hair recently and was very concerned so I emailed her and she got right back to me.

I am still not sure how much she knows about CFS but I have only begun the journey with her and will find out...

I live in NC ...she is right in town and has her own private practice. We have already spent a ton of money on doctors in the past 14 years..with no real help. I am hoping she will be the one.

I definitely need meditation as I can’t handle this either...even though I became ill in 2004 I am worse off now than I was even a year ago so it’s becoming harder to deal with it...

Senior Member

I love Trader Joe's - I would like to "try" coconut water again, water gets so boring.
Which one is the best to try at Trader Joe's?
When I am gone most of day due to dr/dentist I bring Powerade in car - like Gatorade but no sugar.

Senior Member

@starlily88 - None of the treatments she has given me so far has helped at all. I am on stuff the detox my gut and build back up the good bacteria (I had none!). She had me on DHEA and Pregnenlone because my levels were off... but my hair was coming out like crazy so I quit them for now and she has me on some vitamin supplements.

I am really just at the start of treatment I hope. She told me there is much more to figure out so I am hoping.

Meditation is extremely difficult as my body can’t calm itself at all. I always feel like it’s going 100 miles a minute inside... my flight or fight seems to be permanently activated..

Senior Member

To Drob31 - I did all my lab work on May 15th, then repeated June 6th.
My ENDO refuses to give me any Thyroid meds - only gave me beta blocker. This is not helping my
symptoms at all - I still can't sleep, I feel awful - I have all they bad symptoms of hyperthyroidism.

You say "unless it's an easy case, I doubt the Endo can help"
I have appointment at Hopkins Thyroid clinic this Thursday with Doc with years/experience thyroid cancer,
hyper/hypo thyroid, Grave's disease.
I don't have a lot of hope - since 2 ENDOs seem to disagree with each other.

Could you tell me what other resources you can think of - since I need help so desperately?

I did a thorough exam with my ENT - he knew zero about thyroid, wanted me to have endoscopy done, that is nuts!

Senior Member

Have not done the ACTH since going to non-par dr, I don't have clue if his procedure codes/diagnostic codes will get them to pay for it.
newest ENDO ordered a blood Cortisol ACTH test - probably do it next day or 2.
So no one else did a cortisol - the labs I posted are my full thyroid test panel, along with SED Rate, etc.

I have trouble with blood sugar too. Love coconut water but can’t afford as much as i need. I found an electrolyte replenisher powder that has no sugar or fake sugar. It’s by Ultima. I like it because it has 6 electrolytes and 7 supporting vitamins and minerals like copper,zinc. It also has 75 mg. of chloride per 16oz. I’m learning more and more about how if you take this you might need to supplement with that. So much to know. This powder has seemed to help quite a bit.

Senior Member

This sounds interesting, I will look into that, thank you!
I just bought a case of 12 bottles of Vita Coco from Sam's Club for $11 (normally $3 more). They are 11 oz each and when chilled really good. But I've forgotten the grams of sugar